Clinical use of quality of life data for treatment and survivorship in oncology.
Authors: Chantal N.L. Beutter, Dilyana Vladimirova, Uwe Marc Martens, Christian Fegeler
Journal: Journal of Clinical Oncology (2023)

e24044 Background: Since cancer treatment and disease itself may cause chronic limitations, the challenge of reducing symptom burden during therapy and achieving good Quality of Life (QoL) for longevity with cancer becomes increasingly important. Research already shows that including QoL during treatment increases compliance, survivorship and outcome, but the transition of these concepts into regular care are mostly not implemented. Nevertheless, do regular measurements give a good insight to personal deviations and may enable a harmonious transition from clinical - to post treatment and into everyday life. Methods: For this research assessment of QoL was carried out within a registry study of gastrointestinal patients at the SLK Clinics Heilbronn (DRKS00018788). As a registry study, research is not bound to a fixed deadline, therefore we're still recruiting. First, we deployed a process for a continuous, digital measurement of QoL at clinical visits through the QLQ-C30. Parallel, a separate project implemented an app to measure QoL independently from home. Both ways, data is then structured to visualize the course of events for the identification of deviations or trends. Results: Up to now we included almost 100 patients with over 600 assessment points in our study. It could be shown that our process is applicable in the real world setting of clinical routine and accepted by patients. The study has been running for about 36 months and we were able to visualize QoL charts over several data collection points per patient. Trends within data indicate a relation of the clinical course to changes in QoL. Thus, a possible correlation of the decrease in tumor markers with an increase in QoL is shown. Also, progressions usually result in a significant decrease of QoL. Nevertheless, data also showed that one should be careful to relate the course exclusively to therapy or disease, since environmental influences such as injuries, infections or multimorbidity’s did also result in declines. Here, not only the interpretation of the overall QoL is important, but also the consideration of individual dimensions. Thereby specific limitations of how the patient experiences therapy or possible long-term consequences for survivors get more tangible. To better assess these factors, monitoring of QoL is necessary, not only at visits, but also at home. The developed app for assessing QoL independently was able to show that such a survey can be implemented and applied. Uniform data structure via HL7 FHIR ensures interoperability of the data for both systems. Conclusions: It could be shown that a standardized survey of QoL is possible both in clinical use and independently through patients at home. To close information gaps between clinical visits, both concepts should be merged next to enable an independent survey with a continuous measurement across all therapy stages. With that, adjustments or transitions in therapy could be tailored by limitations in a patients’ QoL.